In partnership with Sciensus, The Progeria Research Foundation (PRF) is officially launching Progeria Connect to our full global community of families. We created this platform to help our small but diverse community make personal connections, have access to the latest research news, and build lifelong ties throughout their journey with Progeria.
Progeria Connect enables you and your family to easily and securely communicate with PRF and others from around the world who may share similar experiences, regardless of your language or location.
As this is a truly private site, we invite only the following groups to register:
- Parents/legal guardian(s) of those with Progeria;
- Siblings;
- Grandparents;
Platform benefits include:
- Private groups to share ideas and stories, including Teens with Progeria, Young Adults 18+, and Parents of Children with Progeria;
- Periodic updates on clinical trials and the latest research findings;
- Private messaging to other members of Progeria Connect;
- Information on events and fundraisers;
- Live Zoom video chat capability, including real-time test translations for multi-language calls;
- Our very own Progeria Connect mobile app – available both in the App Store and Google Store to engage with your community while on-the-go!
Register here for your free account: www.progeriaconnect.sciensus.com
Once you register, you’ll hear from us within 5 days to confirm your account to this exclusive, families and caregivers-only network.
